Autism Awareness: Resources that can help

Posted by Lylah M. Alphonse  April 10, 2009 05:41 AM

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Kent and Angie Potter's oldest son, Sam, was born prematurely, and from the very beginning they had a swirl of doctors and specialists around them, helping them navigate the world of preemie development. So when Sam started exhibiting severe developmental delays (above and beyond the ones most preemies have), they had people to turn to for advice.

An autism diagnosis quickly followed, and they began their search for ways to help Sam, who is now 8 years old (their younger son, Luke, 4, is neurotypical). "We were spending over $100K on medical care year after year," Kent Potter recalls. "My accountant said, 'You spent $500,000 in med care the last few years, what’s next? What are you going to do?' And I said, 'I’m going to do something about it'."

That something was AutismSpot.com, a website dedicated to inspiring, informing, and educating people about autism.

With a free online library of blogs, articles, and about 400 videos from parents, teachers, therapists, and medical professionals -- plus 120 or so more on their educator-training platform, SpotUniversity.com -- AutismSpot aims to make information from private providers accessible in a community environment. "You know the last five minutes of a therapy session, when the therapist tells you, 'This is what you should work on at home'?" Potter says. "Many people can't afford to meet with these providers." AutismSpot focuses on offering as much information as possible -- not just the popular ideas. "We don't have to agree on what works," Potter says, "just that there are many options... It's not just about talking. It's about communication."

April is National Autism Awareness month. Each week this month, I'll devote a post to issues that relate to life on the spectrum and the special parenting challenges that autism presents. After last week's post, many readers emailed or wrote comments asking for resources for parents of kids on the autism spectrum, and for information for adults with autism. Here are a few others:

AutismWeb.com
: A parents' guide offering news, conference information, educational resources, and interactive message boards.

Wrongplanet.net:
The forums here are geared toward people of all ages on the Autism Spectrum, with threads for parents, school and college life, jobs, and social skills, as well as active forums on adult autism issues and discussions.

The Autism Research Institute: In addition to information for parents dealing with new autism diagnoses, Autism.com offers resources for those searching for a doctor affiliated with Defeat Autism Now! (DAN) and information about possible autism triggers and the controversial idea of autism recovery.

Parents, please weigh in: What resources have helped you the most?

Lylah M. Alphonse is a Globe staff member and mom and stepmom to five kids. She writes about juggling career and parenthood at The 36-Hour Day and blogs at Write. Edit. Repeat. E-mail her at lalphonse@globe.com.


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6 comments so far...
  1. Please visit http://fearlessfemales.blogspot.com/ , a terrific blog about raising children with autism. My friend Holly Nappi, an amazing mom of two children with autism, shares her personal experiences and offers helpful information for everyone. Holly has a wonderful writing style and offers an interesting perspective as a parent. She blogs daily about an awareness and acceptance of autism, backing it up with stories, sometimes funny, sometimes touching, always engaging. You will enjoy reading her thoughts -- there is always something there for everyone to learn.

    Posted by Christine Carlson April 10, 09 09:15 AM
  1. http://fcsn.org Federation for Children with Special Needs.
    Here is a great resource for families in Massachusetts. They can help with anything from finding more information from Autism and MA laws on special education and Autism.
    http://www.autismconsortium.org Autism Consortium
    Is for families in New England that help you find services, providers and facilities in New England.
    Autism Speaks
    Autism Society of America
    National Autism Association
    This is just to name a few more and they have some great links to hook you up to other resources.

    Posted by AC April 10, 09 09:40 AM
  1. Thank you for posting the interview and story about Autismspot.com. I am the proud grandfather of Sam. This website is truly a blessing for the parents, grandparents, siblings and friends that have a loved one that has been diagnosed with Autism.

    Posted by Richard East April 10, 09 12:30 PM
  1. Parents of autistic kids are often on the spectrum themselves, and parents often find out they are autistic, or are part of the broader phenotype, for the first time when a child is diagnosed. Therefore, parents' own experiences will be of use to their child, perhaps as much as any professional's!

    Posted by Stephanie April 10, 09 01:50 PM
  1. By the way, if your child is having some issues as early as 6 months old, please do get in touch with your local Early Intervention Group (there is one in Stoneham, MA) and Building Blocks (Danvers, MA).

    These folks are great with the kids, and very knowlegeable.

    If anyone else needs to have a shoulder to vent on, I'm a good one.

    Posted by Gia Saulnier April 15, 09 01:31 PM
  1. I know someone in the Boston area that needs a good Dr. to diagnose her child. Any suggestion and/or recommendations?
    Thanks!

    Posted by bgwangel January 23, 10 01:00 PM
 
6 comments so far...
  1. Please visit http://fearlessfemales.blogspot.com/ , a terrific blog about raising children with autism. My friend Holly Nappi, an amazing mom of two children with autism, shares her personal experiences and offers helpful information for everyone. Holly has a wonderful writing style and offers an interesting perspective as a parent. She blogs daily about an awareness and acceptance of autism, backing it up with stories, sometimes funny, sometimes touching, always engaging. You will enjoy reading her thoughts -- there is always something there for everyone to learn.

    Posted by Christine Carlson April 10, 09 09:15 AM
  1. http://fcsn.org Federation for Children with Special Needs.
    Here is a great resource for families in Massachusetts. They can help with anything from finding more information from Autism and MA laws on special education and Autism.
    http://www.autismconsortium.org Autism Consortium
    Is for families in New England that help you find services, providers and facilities in New England.
    Autism Speaks
    Autism Society of America
    National Autism Association
    This is just to name a few more and they have some great links to hook you up to other resources.

    Posted by AC April 10, 09 09:40 AM
  1. Thank you for posting the interview and story about Autismspot.com. I am the proud grandfather of Sam. This website is truly a blessing for the parents, grandparents, siblings and friends that have a loved one that has been diagnosed with Autism.

    Posted by Richard East April 10, 09 12:30 PM
  1. Parents of autistic kids are often on the spectrum themselves, and parents often find out they are autistic, or are part of the broader phenotype, for the first time when a child is diagnosed. Therefore, parents' own experiences will be of use to their child, perhaps as much as any professional's!

    Posted by Stephanie April 10, 09 01:50 PM
  1. By the way, if your child is having some issues as early as 6 months old, please do get in touch with your local Early Intervention Group (there is one in Stoneham, MA) and Building Blocks (Danvers, MA).

    These folks are great with the kids, and very knowlegeable.

    If anyone else needs to have a shoulder to vent on, I'm a good one.

    Posted by Gia Saulnier April 15, 09 01:31 PM
  1. I know someone in the Boston area that needs a good Dr. to diagnose her child. Any suggestion and/or recommendations?
    Thanks!

    Posted by bgwangel January 23, 10 01:00 PM
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About the author

Barbara F. Meltz is a freelance writer, parenting consultant, and author of "Put Yourself in Their Shoes: Understanding How Your Children See the World." She won several awards for her weekly "Child Caring" column in the Globe, including the 2008 American Psychological Association Print Excellence award. Barbara is available as a speaker for parent groups.

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